Thursday, May 6, 2010

Tube weaning: Day 6

2 tolerated sips from me tonight. He was very distracted. As soon as he realized what was going on, he pushed back again.

He did eat solids very well today. He had 12.5 oz of purees at daycare, including one meal of 6 oz at once. The daycare said that she fed him half as he usually would eat, she turned to put something in the sink and he was self feeding himself, so they finished the jar.

We went out to dinner tonight (I decided to break my diet and have a margarita. Or two.) and he ate probably 6 cheezits, a chunk of chocolate graham cracker & several small pieces of bread. I gave him some fruit as well, but he didn't even touch that.

He had 400 calories in purees, plus whatever all the crackers and bread added up to. I didn't even include those in the tally. I tried to wait for him to sleep to start his drip tonight, but yet again, he laid awake until I turned it on. He's normally asleep very quickly. But every night since we started this, he's laid awake a long time. I can't help but feeling like he's waiting to make sure I'm going to come in and make his tummy feel better.

Emotionally, I'm okay. The margaritas helped. I honestly couldn't tell you the last time I had more than one drink. Hell, I can barely tell you when the last time I had *A* drink was. But I was really wallowing. And damn, they were some good margaritas.

In a sad but funny moment, Robbie kept reaching for the margarita shaker on the table. I finally told him "that's a drink." He turned his head to the side, said no and never reached for it again. I don't know if I should laugh or cry.

We're just trying to muddle through. I have a few ideas for different things to try, but I can't say I feel that hopeful about any of them. I just know I can't give up.



Tracy said...

Oh, Robbie! You get an eyeroll about losing interest in the drink shaker. Stubborn little boy.

Trish, glad you got some stress relief out of the margaritas. I think you deserved a whole pitcher, not just two drinks.

Hang in there, honey. You and Robbie are made of tough stuff. That's where he gets his stubborness from. ;) I think his stubborness and determination has served him well on many things. He will get this, probably just before you pull your hair out. He's on Robbie time. I hope you are happily surprised soon.

S said...

Still praying for you guys. I know it must be so hard for you as a Mommy. I agree with Tracy on the determination characteristic. It served him well when we were all rallying him to grow strong and survive, now I'm afraid it is really going to test your patience and endurance!

Alex said...

Stay stong, you're doing great!! Thats a stubborn little boy you have there. Is there any way you can not tube him one night or two or would he dehydrate too quickly? Drinking was never an issue for my kids so I don't know.

Nicole said...

You deserved those drinks, you've earned them!

Nikki said...

My son is 100% tube fed and we are working on oral feeding (though nowhere near as far along as you guys). I can totally relate to the highest of the highs on the days when they do "well" and then plummeting to the lowest if the lows on those other days. Why, oh why, do they not just get better and better, slowly, day by day? We had a great week here last week - 5-6 bites of purée each session, allowing the bottle nipple into his mouth with some juice drips, super interested in eating and happy. This week = pushing the spoon away after one bite. I have no idea why.
I'm so sorry it's hard...

Searching said...

I'm glad you enjoyed your drinks- totally deserved it!!! I'll keep praying for Robbie and for peace in your heart for you. Don't give up!!!